Do I need a second opinion?

[Jake’s Mom]

My son has been having constant belly pain for over a month, been to ER a couple time and they ruled out appendicitis. They sent us to gastro and she ran Celiac test, his tTG IgA came back at 99 (normal less than 15), has EGD and they said “no celiac”.  I’m wondering if the doctor didn’t run enough bloodwork or whether they didn’t do something corre t on the EGD. I don’t see anything about IEL’s or Marsh stages or anything. I feel like they were more concerned about the idea of reflux and not the celiac diagnosis. This is his pathology report. Do I need a second opinion? Can I go to an adult celiac specialist if he’s 13 and adult sized? Is he in the early stages of developing celiac? I don’t want to impose the diet on him if he’s not celiac. The gastro dr said that he could test that way if a first degree relative has it....that makes no sense to me. Why would his numbers be 5-6 times the upper limit if he doesn’t have it? I just don’t know where to go from here and I hate that he’s still in pain. Any advice is appreciated. Thank you!

-Vickie 

[cyclinglady]

1 hour ago, Jake’s Mom said:

My son has been having constant belly pain for over a month, been to ER a couple time and they ruled out appendicitis. They sent us to gastro and she ran Celiac test, his tTG IgA came back at 99 (normal less than 15), has EGD and they said “no celiac”.  I’m wondering if the doctor didn’t run enough bloodwork or whether they didn’t do something corre t on the EGD. I don’t see anything about IEL’s or Marsh stages or anything. I feel like they were more concerned about the idea of reflux and not the celiac diagnosis. This is his pathology report. Do I need a second opinion? Can I go to an adult celiac specialist if he’s 13 and adult sized? Is he in the early stages of developing celiac? I don’t want to impose the diet on him if he’s not celiac. The gastro dr said that he could test that way if a first degree relative has it....that makes no sense to me. Why would his numbers be 5-6 times the upper limit if he doesn’t have it? I just don’t know where to go from here and I hate that he’s still in pain. Any advice is appreciated. Thank you!

-Vickie 

What did the GI advise?  Did he tell you to go on a gluten-free diet and then retest in three or six months to see if the TTG comes down?  What about adding the EMA or DGP antibodies tests?  

It is easy to miss damaged areas of the small intestine.  It is larger than a tennis court!  One month of abdominal pain?  Maybe he is just developing celiac disease.  

I would  get a second opinion.  Keep advocating for him!  ?

Edited August 3, 2018 by cyclinglady

[Sugarcube]

Esophagitis can itself can cause an elevated ttg without celiac.

The celiac genetic test could help rule out celiac if he doesnt have the genes.  The DGP test would be useful also.

 

[tessa25]

I can't read that report as the font is too small. Did you get that report on the day of the egd or a week later?

If that report says everything is normal with the esophagus and the small intestine you can always try 100% gluten free for 3 months (no accidental gluten) and see if the TTG IGA goes down. You would have to get the blood test done at the same lab.

[Jake’s Mom]

His GI was out of town so another GI called to give us the results. It did show some inflammation in the esophagus, she put him on Prilosec for the time being because she said the damages be due to reflux. I’m wondering if he’s in the beginning stages of developing it also. I just feel like maybe they didn’t do enough bloodwork to give them a whole picture. 

Thanks for your replies!